Friday, November 23, 2012

216.8 Miles For Ryan


My story guides me on a daily basis.  It will always be in my heart so this time I train for someone else………

216.8 miles for Ryan Mattingly.

I preface the rest of this post to say a successful journey here is critical.  I have come to you asking for support 11 prior times and you have all helped me to reach each and every goal.  You might think success on eleven occasions takes the pressure off for number 12 but I feel more pressure for this endeavor than ever before. Ryan is watching. He knows this is for him.  I must succeed.  Help me show him the world cares by considering a donation at the link above. Now to the rest of this post...........

Most of you know my story especially if you are here at my site (and didn’t overlook the header).  I actually started this blog when my wife was diagnosed with cancer for the 2nd time.  I needed a voice and I felt being open about my story might help others to get through their own difficult times. In case you missed the header and/or this is the first post you are reading, my story began in September 2002 when my father was diagnosed with leukemia.  He fought for sixteen months but ultimately lost his battle.  During his battle, my daughter Isabella passed away at birth and shortly after my father lost his battle, my wife was diagnosed with cancer for the 1st time while pregnant with my son Jaden. These events were very difficult. Just when I would get my footing from one piece of bad news, something else would go horribly wrong. While I miss my father and daughter terribly and while I still sleep with one eye open tied to the cancer that knocked on my family’s door twice, so many good things came out of these dark times.  I always use the quote “Strength is born in the deep silence of long suffering hearts” from Arthur Helps to describe my transition from pre Isabella to the person I am today. My hardships defined me.  They built me. They led me to endurance sports. They led me to being a #beatcancer warrior where I will battle until my last breath. The led me to teach,  motivate and hopefully inspire others which is something I consider a blessing for me much more than I view it as a blessing for those I help.  None of these things would exist if I had not lost so much. 

Most of you also know my philosophy on life but in case you do not, the short list is as follows:
·Blessings come from the worst of times
·As individuals we all have the ability to change the world and if we, as individuals ban together, changing the world is inevitable.
·Running and endurance sports will change your life.
·Doing things for others is far better than the opposite.
·UCLA > USC (I had to sneak that in……I am sure I just lost a few donations but I found it funny).
·Staring doubt in the face and shoving it aside is one of the best feelings on the planet (coincidentally shoving doubt aside is a big part of running and endurance sports).
·Wherever we find ourselves in life, be it a grand place or a dark place, that is where we are meant to be. We must do our best to savor and learn from every experience for it is a stepping stone to who we become.
·We must live our lives so that our legacy goes on far after we are gone.
·If we are still breathing we have not yet accomplished all we are meant to accomplish.

Ryan (right) with Katie (obvious) and brother Daniel
Because I am still breathing and because we still have progress to make in the war against cancer, I come to you with my latest stop on the #beatcancer tour.  I first joined Team in Training in 2004.  I wanted to complete a marathon because it was a gesture to my father who, at that point in time, was terminal.  It was a gesture because I was afraid of running a marathon. It scared the hell out of me and my Dad was a stare fear in the face kind of guy.  I thought my journey would end after one marathon but here we are in 2012.  I have gone on to complete a total of 11 events with Team in Training from half marathon to Century rides to 3 Ironman distance triathlons.  More important…… me…… that I have gone on to coach marathon for many seasons at Team in Training where my collective teams have literally raised millions of dollars towards cancer research.  This ties to my belief about living your life to build a legacy. As a coach, I get to teach people all they are capable of and they get to challenge me to be a better person. People I have coached have gone on to do amazing things well beyond our season together and that is the one thing I am most proud of.  I have changed lives and within Team in Training have built something that will grow and sustain itself as people continue to come back season after season.  If I died tomorrow, that would be my legacy.  As for this stage of the journey, I am not trying to outdo myself.  I only have one goal and that is to raise $15,000 by June 2013 as I race 216.8 miles over 3 different events:

·California International Marathon on December 2, 2012 followed by,
·American River 50 Mile Endurance Run on April 6, 2012 closing it out with,
·Ironman Coeur d’Alene on June 23, 2013

·26.2 + 50 + 140.6 = $15,000

I have no time goals.  Finishing all three events is the goal which, for me, has meant a complete change to the way I train and frankly the way I live.  It started back in the Spring of 2012 when I started thinking about this next endeavor.  Over the years I have had many stress fractures in my shins and feet.  I firmly believe these were tied to the way my foot strikes the ground when I run.  I am (scratch that….was) a severe heel striker.  It was so severe that I believe the impact over the miles was causing the injuries.  In looking ahead last Spring, I did not believe I would ever make it to the start of a 50 mile run if I maintained the heel strike so I changed it.  It was not easy for me but I started moving to a mid foot strike because it creates so much less impact.  Sounds fairly simple but the change wreaked havoc on my body.  My knees were not used to the change and I dealt with months of transitional pain.  I pushed forward and didn’t give in and ultimately that pain passed.  When it did, horrible back pain ensued all just because of the transition.  I spent many sessions in a chiropractors office but I did not give in and ultimately it passed.  Today I have some severe foot pain when I clear 20 miles but I am trying to work through this too (might make the marathon challenging).  Beyond the change to my running gait, I have moved to training by HR and I have completely changed my diet.  I will go into detail in another post but I had a horrible HR test that lead to these changes which forced me to slow down and forced me to eat much better.  The days of eating a pint of Ben and Jerry’s before bed because my metabolism allowed it are behind me although I have to sneak in half a pint now and then just so I don’t get bored of myself.  I am making all of these changes to make sure I get to the start line of each event and cross the finish line of all three culminating with the Ironman next June.  My goal for that race…..celebrate successfully raising $15,000, pray like hell to celebrate a healthy Ryan and high five 140.6 kids along the course.

Now let me tell you a little bit about Ryan.
Ryan (right) and best friend Gabriel who shaved his head out of friendship

·He is 19 years old.
·Ryan loves sports.
·Ryan completed his 1st year of college at San Diego State this past May 2012.
·From April until now, Ryan has been admitted to the hospital 12 times.
·Ryan is currently fighting Non Hodgkins Lymphoma instead of attending his 2nd year of college.
·I have never met Ryan!

That last bullet might be shocking for some.  Even Ryan questioned why I would do all of this for someone I have never met.  The answer is easy for me…..

“Dare to reach out your hand into the darkness, to pull another hand into the light.”  Norman B. Rice

It is what we all need to do.  Reach out our hand to help someone in need.  You see I know Ryan’s Mom and I assure you I will meet Ryan soon enough.  I had a chance recently but have been sick and did not want to expose Ryan to anything I might be carrying.  I learned this lesson plenty when my Dad was fighting for his own life.

You see, Katie Mattingly was on my Summer 2012 Marathon team.  We met at an information meeting where I was there to speak on behalf of the marathon team.  Katie showed up a ball of energy and I could tell our team would be better off with her than without her.  Good souls scream out and Katie is one of the best souls.  She signed up to be on the team and committed to the San Diego Rock N Roll Half Marathon in June 2012.  Katie did an amazing job.  She did everything we asked of her and I think the life lessons and messages got through as well.  One of these ties to pushing yourself beyond what you think you are capable of which is a message we discuss when I try to convince those signed up for the half marathon to do the full marathon.  Do not get me wrong……….I am proud of EVERYONE crossing the finish line.  There are plenty of reasons to do the half marathon versus the full but I always tell my teammates this………….if you are signed up for the half ONLY because you doubt your capability of finishing the full…..for the love of God trust me and switch to the full and together lets shatter your perceptions about yourself.

Katie listened.  She switched and on June 3, 2012, she completed the full marathon in San Diego.  A few weeks before race day, though, Katie was very emotional at our Sunday practice.  Truthfully, this isn’t that uncommon as race day gets closer but something was off and I reached out to Katie to see what was wrong.  Katie was a mess because her son, Ryan of course, was away at school and not feeling well at all.  Ryan was having cramps, vomiting and losing a lot of weight among many other symptoms we do not need to discuss.  Any parent would be upset at this but there is more to the story that led to Katie’s distress.

I write about all of this at my fundraising page but when Ryan was 5 years old, some routine tests turned into the discovery that Ryan only had one kidney and, unfortunately, that single kidney was not functioning so well. This normal boy learned so very early in his life that he had kidney disease and would need a transplant in order to live.  At 5, he was too young for the transplant so the surgery did not transpire until Ryan was 8 years old.  His Dad was the donor and the surgery went well.  One year post operation, Ryan was doing great.  He was living a fairly normal life except for all the routine checkups that go with being a donor recipient.  He went on to be a normal teenager and went on to high school and was even good enough to play baseball all 4 years (I am jealous Ryan!).
Katie (always smiling) and Ryan

After high school, Ryan was accepted to San Diego State where he began college in the fall of 2011.  There was some nervousness about Ryan being a few hours away from home given his kidney transplant but Katie had commissioned an army of help in San Diego that was aware of Ryan’s situation and capable of helping.  Every two months Ryan would have to come home to Los Angeles for more of those routine checkups to make sure the transplant was all good and that the kidney was functioning properly.  All was actually good until the Spring of 2012 which leads us to the Sunday when Katie was upset at practice.  Ryan had been complaining about not feeling well tied to the symptoms I mentioned above (cramps, vomiting, weight loss) but things got worse in April 2012 when Ryan began to vomit blood.  This led to Ryan’s first visit to the ER.  As you would expect, a lot of tests were performed to determine the source of the blood. No ulcers were initially found.  A colonoscopy did not reveal any problems and lastly an MRI was performed but also showed nothing.  The source of Ryan not feeling well was yet to be determined.  The next step in the process was a capsule endoscopy, which meant Ryan swallowed a small pill that actually contained a camera to record images of his digestive tract.  This ultimately led to the discovery of a lot of small ulcers in Ryan’s small intestine.  While this was not great news……. it was still news and there was some relief at the mystery being solved.  The hope was that the ulcers tied back to the medicine Ryan had to take for his transplant because one of them was known to do so. Ryan was allowed to finish school before dealing with the situation and in May 2012 Ryan completed his first year of college.

After this, Ryan came back home but he was not feeling so well.  He was still sick. He was still losing weight. He was still vomiting. Because things were not improving, doctors went in and took a biopsy of one of the ulcers and this is when the picture took a turn for the worse.

Cancer was the diagnosis.  To be exact, it was a form of Non Hodkin’s Lymphoma called PTLD – Post Transplant Lymphoproliferative Disorder.  All you need to know is CANCER.  At nineteen, having survived a kidney transplant was not enough.  To be honest, this diagnosis ties back to the transplant years ago. Less than 2% of kidney transplant recipients get cancer and Ryan unfortunately was one of the few. Cancer knocked on Ryan’s door and all that goes with that diagnosis is still in process as I write this post. My kids are lying behind me on the bed watching Step Up Revolution while Ryan is fighting for his life.  I do not know what you were doing on Friday November 16th but I can tell you Ryan was in the hospital for his 4th round of chemo.  As if cancer was not enough to deal with, the chemo actually worked so well initially that it melted the cancer.  While this is good in some respects, it caused an obstruction in Ryan’s bowel, which made it impossible for Ryan to eat.  Because of this, one of those 12 hospital visits between April and now was used on surgery to remove parts of Ryan’s bowel. 

I will update you over the next few months as to the progress of Ryan.  I will document his story here.  I will be his voice.  In the meantime, while Ryan goes in for his 5th round of chemo, I will run.  While Ryan fights for his life, I will swim and I will bike and I will lift weights and I will work my core so that I might actually finish these 216.8 miles in his honor.  Won’t you please join me on this journey and help me reach my $15,000 goal.  This is where I need your help.  I will put in the miles.  I will handle the racing.  I will deal with the aches and pains and sweat and tears.  I need you to join me though.  My goal is lofty but as I said above, I believe we can all make a difference and change the world.  Let us change the world together and what better change than finding a cure for cancer.  Let’s make sure Ryan knows we care and lets make sure our kid’s kids only get to learn about cancer from the history books.

If you would like to make a donation, you can click here or click the link at the top of the page to go to my donation page.  As I write this, I am close to $4,100…….$10,900 to go.  Whether you can financially assist or not, I appreciate the support more than you know.  All the kind words that have come in mean so much and will help drive me to the next 3 finish lines.  They are special places because that is where I meet up with my Dad and Isabella.  I would like to meet them having completed a successful journey so please consider helping and please help spread the word by sharing this post.

Thanks so much for your time in reading more of my long winded prose.   Until my next post or until we meet in person next, live your life with passion and go make a difference.

Christopher D. Wilno

Tuesday, July 31, 2012

Dear Isabella

July 31, 2012
Dear Isabella,

Nine years have passed. I am a different person now because of you. I am a stronger person because of you. I have helped a lot of people because of you. I have helped change the world because of you and I have helped others to do the same. That being said………as strong as I may be…… today is a struggle for me. It is always a struggle but for some reason today is much worse…….more intense. I am sitting on a plane heading home from a work trip and I keep staring at my watch knowing that nine years ago around this time, one phone call changed everything forever. One minute I had the intense joy of knowing I would meet you soon coupled with the joy of knowing I was hours away from celebrating with your Mom the day we were married. That would be a special combination any year but this was extra special because, without you I do not know if the anniversary would have happened. There was a time when your Mom and I were struggling and heading different directions and you changed all of that………you brought us back together and reminded us of the love we shared for each other. You reminded us of why we were together and how we fell for each other years prior and you reminded us that a life together was what we wanted.

The phone rang though. I play it over and over in my mind and simply wish the phone had not rang.

“I cannot feel Isabella kicking anymore”. That is what Mom said.

Haunting words. I wish I had known you needed me. Maybe I could have helped. I certainly would have tried. Maybe you would still be here today filling my day with laughter instead of the tears that are streaming down my face as I am sure folks around me on this flight wonder what is wrong.

The phone rang though and the rest of the day and evening were a blur of hardship. I held you. I was only given a few minutes but I savored every second because I knew it would be a long time until I would get that chance again. I know you are okay. I know with all that I am that you are in a good place. I just miss you. Until that day comes when I can hold you again, please know that I am grateful for the changes you brought my life on your short stay with me. Please know I did not stay down in sorrow but stood up in strength. That is your legacy………… me the strength and desire to lead a life that leaves behind a legacy of my own.

Meet you at the usual place……my next finish line. Until then,



Sunday, July 22, 2012

Isabella's Day 2012

I think I have said this every year… is hard to believe another 12 months have passed.  I guess that at 45 years old, that is true of life as much as it is Isabella’s Day.  This post is not to talk of life, though.  It is, of course, to talk about my little girl. In that sense, I guess this post is about life.  It is about loss and is about moving on and living without and waiting to meet again.  Isabella would be 9 this year on August 1st of 2012.  She certainly is still 9 this year……..just not here.  I know she is somewhere with a big smile and having a good time but I cannot hear her and that makes me sad sometimes.  This post will not be long.  I have already shared the most intimate details of Isabella throughout this blog.  If you know me or have read the posts, you could probably put good words to how I feel without me sharing them with you any more.  Truthfully, I was not going to write a post this year.  I was going to ask the favor I always ask and will do so again at the end of this writing.  A post, however…………..I was going to skip.  That was until Rich Cruse took the photograph you see above.  Rich is an incredible artist with his camera and on one particular day, I happened to catch the twitter post where he was sharing this photo with the world. It is a beautiful shot and to most of you it is simply a remarkable photo of a random girl on the beach. To me, however, I see my precious little girl.....wherever she might be.  It was an Isabella moment.  They come less frequently 9 years after Isabella’s passing but when they do come, they hit hard.  It is to be expected.  Time 'heals' goes the saying but it is probably more like time 'suppresses'.  

Anyway, at seeing the photograph above I started to think.  More accurately...I stopped and realized.. that I have this recurring image in my head of my little girl.  I saw Rich’s work and realized his image is often the image I picture in my mind of Isabella playing at the beach and splashing in the waves.  Just like Rich’s image, I can never make out all of the detail.  I know it is Isabella though.  She is my child and while I have never heard a single word from her, I swear I would…and will……know my little girl when our paths cross one day.  This is probably because I think about her often.  Much of what I do today keeps her and my Dad close at heart.  When I swim or ride or run or coach the course for Team in Training, it is the thought of Isabella that keeps me going.  When I want to quit, she drives me forward.  When I am tired, she gives me energy.  We never met but she is my inspiration and it is truly a blessing to have something so fierce to drive you on a daily basis. She helps me to make good decisions because I know she is not only watching my life but I know I will look her in the face one day.  When that day comes, I do not want to have to bow my head in disappointment but hold my head high proud of the life I produced.

Regarding Isabella, Rich’s picture lead me to an idea of putting words to what I think Isabella would be doing today.  Would she be great in school? Would she like running? Would she still be afraid of the dark? Would she like Barbie? Would she like Hello Kitty? Which would be her favorite? Would she sit and watch Braves games with me or football on Sunday? Would we be best buddies or at 9 would she distance herself from me to look cool to her friends?  Would she like to read?  If so, would she make time for it? Would she love the same music as I do (I am young when it comes to music taste!)? Would we go to concerts together? Would she have a tattoo………hell no….just kidding as this question never enters my mind?  What kind of movies would she like?  Would her favorite color be pink or orange like me? Would she….God help me….like Bieber?  Would she like Math or English better? Would she be bugging me for a cell phone? Would she be on the local swim team? Would she play soccer?  Would she like Nutella and crave s'mores? Could she sit and admire the beauty of the sky like I can? Would she share the amazing smile that her Mom has?

These are all questions I ponder from time to time.  Not because the answers matter but because I like to remember her and think about her.  I do not want to move on from her which is why you will often hear me say  I ‘Run to Remember’.  Some would perhaps want to forget in this situation but I never want to let go.  On this note, I decided not to post any of my thoughts on this subject.  Honestly, I am not sure I could get to clear answers because the answers do not matter.  Whatever traits Isabella possessed today would not impact anything let alone how I feel.  Short or tall.  Fat or skinny.  Loves hanging out with me or would prefer her friends.  Loves to run…hates to run. Straight A student or struggles with every subject. None of it would matter.  She would be my little girl and I would Love Her with all that I am. Truth be told, living with loss is living without the answers to these questions.  Until I actually know the answer, I will hold a special place in my heart for Isabella.  Nobody can get to that special place but her.  Nobody can take the thought of her away from me and, while those thoughts can make me sad from time to time, I would never and will never give them up.  All I can do is live a life that makes her proud and be the best Dad to the children I am blessed to still have with me.  My son, Jaden, is my best buddy and my daughter, Thalia, is as close as you can get to an Angel here on earth.  As I always say, blessings come from the worst of times and these 2 children are among those blessings for me.

Now it is time for that favor.  It is the same one I ask every year and is meant simply to help me remember my little girl.  On August 1st, sometime during the day, I ask that you raise a glass to my little girl.  It can be a coffee, a bottle of water or a Kettle One Martini.  The drink does not matter.  It is the moment you give to remember my little girl that matters.  As always, thank you for the gesture.   It might seem silly but it means everything to me and my wife.

To Isabella!

Note: A huge thank you to Rich Cruse for his amazing work.  If you would like to see more of Rich's work, please do yourself a favor and visit RICH'S WEBSITE

Saturday, April 14, 2012

Running from Ritalin: A Hope for My Son

What does the movie Moneyball, the song Perfect by Pink and a 5K in Agoura have in common?  Other than this post, probably not a lot of things.  For me, though, they all led me to put words to something I have been struggling to write.  At one point this post was written to a series of people……….my son included.  Recent events though have me focusing this entry on Jaden, my amazing 7 year old best buddy.  This post will be a mess of thoughts that are in my head.  They may make no sense to anybody but me but they are eating me up and I need to get them out of my head.
I always refer to Good Plus One as a blog but to be honest with myself, I think it is hardly that.  I am not sure what a ‘blog’ technically is but I imagine the definition involves a frequency of writing far more than I contribute.  I started this site to track my wife’s second battle with cancer.  I certainly have utilized it to help fight back against that cancer, the cancer that took my father’s life, the cancer that attacks my friends (both virtual and real life) and the cancer that looms out there waiting to attack any one of us.  This site is also a place for me to go when I want to write………….I have hopes of writing a book one day.  This site gives that hope……..well, hope.  My life is insane.  Time to write is not abundant.  I rest easy, though, knowing I have a place to go when time permits itself.

I would also like to think this site is a source of motivation for some.  If it is not, I would like it to be.  I would like to inspire people.  I would like to get people off the couch for whatever reason that put them there.  I would like people that have lost their way to read my words and find direction.  I would like people that doubt their ability to find some faith and reach……….well, beyond their reach.  I want people that doubt their ability to make a difference to know changing the world is a real possibility.

Although self-serving, I think Good Plus One is also here to help make me a better person.  By putting my thoughts on paper, I center myself and make sure I am being the best person I can be.  I have somewhat of a photographic memory (although I think it is fading a little bit with time).  What I see on paper, I internalize.  In college, I would write notes for a test in tiny print on one sheet of paper.  When I would take the test, I could see the answer to the question on that sheet of paper as if it were sitting in front of me.  Seeing my words and my beliefs and what is right on a sheet of paper commits them to memory and assures I try to live each moment to the best of my ability.

At the very least, I would like this site to be a place my children can one day go and understand what is going on in their Dad’s head.  I, of course, hope to teach them that face to face but there are things going on today that a 4 year old and 7 year old certainly will not understand.  On Sundays, for example, my children know they will wake up and Dad will not be home.  They know I coach a team and I can certainly explain ‘why’ I coach but there is no way they understand all the nuances of what coaching for Team in Training and fighting cancer represent.   My son Jaden is starting to understand what I do tied to a recent reunion with one of his school friends named Eliot.  You see,   Jaden’s friend has been very sick and because of that has been in and out of school.   Oddly enough and sadly enough, the sickness that keeps Eliot out of school is leukemia.  Jaden knew this but recently put 2 and 2 together to realize that leukemia is why he will only know his grandfather (my father) through photographs and stories.  How do I know that Jaden finally understands the evil that cancer is? Well……after that reunion with Eliot, Jaden came up to me later in the day to ask me a favor.  He said “Dad, I know you have a team and I know that Eliot has what your Dad had and I know that your Dad died from what Eliot has.”  He then asked me a question that dropped me to my knees………”Dad,  can you please save my friend?”  My eyes water just thinking  about that interaction.  All I could tell my son is that I was…..and would continue…… to do everything in my power to save his friend.

Today this post is not about fighting cancer (although I always accept donations).  It may not motivate anyone other than myself and I am okay with that.  It is written for my son Jaden and it is written in the hope that his Dad becomes a much better and understanding father.
Jaden being sick = steroids = large child

Ever since Jaden was born, I wanted to write for him…………I wanted to write to him.  I wanted to share all the thoughts I had watching him grow up………the good and the bad.  I wanted to share my thoughts when I heard him talk for the first time, saw him laugh for the first time, saw him take his first steps, saw him get 100% on a spelling test for the first time, saw him get his first baseball hit and saw him cross his first 5K finish line.  I also wanted to share my thoughts watching him struggle as a little boy to make friends………something that was tough for me as a kid too.  Jaden was very sick as a baby and had to be isolated from other children for the first 3 years of his life.  This isolation created some difficulty with social skills which, I believe, still affects him today (I am not saying Jaden lived in a bubble but his exposure to other kids was greatly reduced).  I wanted to put to words my apologies for being an overprotective Dad.  I have a good excuse for that.  Before Jaden was born, my daughter Isabella passed away.  When you hold your child in your arms and that child is not breathing…………it is tough to overcome and tough for the children that follow.  I try to adapt.  I try to get stronger.  I am getting better but I have a ways to go.  Anyway, my hopes to write for Jaden never transpired.  I still have the journal I purchased for that very purpose but it lays blank by my bedside as a reminder of time lost.

When my son finally grew out of his horrible allergies and was allowed to enter the free world with the rest of the children, things were a bit challenging for him.  He did not know how to share because he never had to share.  It wasn’t that he was selfish, it was simply that he had never interacted with other children before.  He was thrown into a foreign environment and it was tough to watch him struggle.  I remember taking him to the park. He would try so hard to get someone to play with him, so hard to have someone be his friend. It was always awkward and it was rarely easy.  As his Dad, I just wanted to make everything all right.  I wanted him to feel accepted and loved. Jumping ahead to present day, that is where I find myself as I write this entry.  I want to make everything okay but this time it is a little more than just making friends.

Time passed and Jaden went to preschool. Things got a little easier but Jaden struggled to make it through each day without trouble. He was wicked smart but troublesome and it took a lot of patience on behalf of the teachers to deal with him.  I always attributed these things to his first years of separation but every once in a while I would muster the question to my wife about whether she thought he might have Attention Deficit Disorder.  Truthfully, I didn’t know what having ADHD meant but I do know that I feared the answer every time I posed it.  My wife would always assure me things were okay and we would move forward in time. 

Jaden made it to Kindergarten and was blessed to have an amazing teacher.  He dealt with many of the same struggles but this is the first time somebody used the word ‘gifted’ to describe my son.  Gifted was a word I could deal with.  Gifted is something that made sense to me because he was so very smart.  I figured that my son must simply be bored because the work he was being asked to do was so easy for him.  I liken the way Jaden acted to Chapter One of the Steve Jobs book where Steve would keep getting in trouble at school because the school could not keep his interest. Somewhere along the way I am sure I asked my wife the ADHD question and then tentatively moved past it hoping it would fade into the distance.  In my mind I always use the 3 years of separation that started my sons life as the reason for all of this.  I know this excuse will not always be allowed.  At 18 it will no longer make sense but I could certainly use the excuse at the age of 5-6.  One other note here was given my son’s  October birthday, he was the youngest person in his class making my excuse even more plausible. He was socially behind by 3 years and was among children that were all older…..thus more mature……than him.  My wife always questioned whether we should have kept him back a year before entering school but we always point to the fact that even as the youngest he is one of the smartest and already bored.  How bored would he have been had we held him back.

On to the 1st grade. Same struggles.  Same ‘Gifted’ terminology was used to describe my son except this teacher was certain he was gifted.  She was amazing and found ways to challenge my son to keep him interested.  She would reward him by giving him more challenging things to do and she seemed to relish in the challenge that was my son.  The last 2 months of the 1st grade were magical for my son.  He had bonded with his teacher and every single day was a good day.  I finally breathed a sigh of relief that everything was going to be okay.

The new year arrived and my son entered the 2nd grade. Out of the gate, Jaden had a lot of struggles.  My son does not do so well with change so we just figured and hoped he was in an adjustment period.  He was very sad to be separated from his 1st grade teacher but we figured he would slowly get accustomed to his new classmates and his new setting.  Some days were okay but we started to have more and more calls from the school office.  Jaden was a little more disruptive and was not listening to the teacher.  This time, the ADHD question surfaced but this time it came from the Vice Principal because every time she seemed to be at the school, Jaden was in the office in trouble for something.  Again, my son is extremely smart and the ‘gifted’ term continued to be used but I started to fear something else was wrong.  I felt and, while writing this post, feel like the pressure of this ADHD question has been building for years and I feel this insane weight on my shoulders awaiting the answer. When my phone rings at work and I see it is my wife calling, my heart rate goes through the roof at the fear of receiving some bad news about the trouble my son is having at school.  This fear is not about the inconvenience.  This fear is about my son and how all of this is making him feel.  I have tried everything I can and feel like a failure because to date I am not making much progress for my son. 

Some situations at school recently forced us to get Jaden a counselor.  This counselor has been seeing my son weekly for a month or two and last week’s session saw the doctor ask if I would attend my son’s session next Monday.  My immediate thought was that he has finished his assessment and is going to diagnose my son with ADHD.  My wife indicated he is leaning that way and it FREAKS me out.  Don’t get me wrong, there are far worse things my son could be diagnosed with……..I have experienced that first hand on multiple occasions and I have witnessed it through friends and family many more times than that.  My son could have cancer or some other debilitating illness and I would gladly choose an ADHD diagnosis if I had to.  That being said, I took a quick glimpse at the internet and the brief things I read before running from the computer in a panic have me incredibly upset.  I do not want my son to be labeled.  I do not want my son to struggle.  I do not want my son and will not let my son take medicine.  If diagnosed with ADHD, Ritalin may be proposed as a solution but I will be sent to prison before my son ever touches that medicine.  I have talked to people that have been around others taking Ritalin.  These children were said to appear like a cloud had come over them and I even heard the word ‘zombie’ used.  That will not happen to my son.  I will quit my job and live in a box if I have to be there for my son.  My wife has already quit her job, which will put a financial strain on the family, but I could care less.  She can now be at Jaden’s school on a daily basis making sure that he gets through each day with success.  It may be a temporary solution but at least it allows some time to figure things out.  This may all sound silly to those of you reading this.  I have cried (in full disclosure mode here) 5 times just writing about this.  I do not know if it is sensitivity tied to already losing a child.  I do not know if it is simply a father’s love for his child.  All I know is that I am terribly upset and just want my son to be okay.

Turkey Trot Finish Line
How does Moneyball fit into all of this?  To explain that, I have to back up to October of this year when I started running with my son.  He was only 6 at the time so I would not let him run too far but I did give him the okay to train for a 5K.  It was something we could do together.  It was something I thought he could use to channel his energy.  It was also something his 2nd grade teacher was very good at so I thought it might help my son to feel a connection.  We started running with just a mile and even in that mile we used a run-walk interval.  I did not have any time aspirations for my son.  I just wanted to have fun with him.  I would offer coaching suggestions but just so he felt good about himself and so that he felt like he was working towards something.  He has seen me coach at Team in Training many times and now he was able to have his Dad as his coach.  We had an amazing time.  The Burbank YMCA Turkey Trot was his 1st 5K and we had a blast.  I was so proud of my son.  It was the first time he ran without stopping and he broke 30 minutes which was a target we threw out there for fun.  After the Turkey Trot, my son took some time off for the holidays…..sounds funny I know but to a 7 year old (he turned 7 shortly after we started running on 10/29/11) Christmas was much more exciting than running.

I think it was not until February 2012 that the talk of another 5K came about.  I let Jaden choose a race and he picked the Agoura Hills 5K which was part of the Great Race of Agoura which features a half marathon, a 10K, a kids mile, a kids fun run and, of course the 5K my son would be competing in.  We started training but it felt like we didn’t have too much time before the race would be upon us.  I told Jaden we needed to get in 3 runs per week.  I would give him 2 shorter runs and then one longer one of 2.5 to 3 miles.  Up until this point in my son’s brief running career, I would have to spend a lot of time distracting my son from the actual run.  I would get him to talk about toys and forget about running because he would get whiny and not really push himself if he thought about what he was doing.  He had a great time but I think he was dramatic about it.  Talking about Beyblades or Bakugans would allow him to pass the time before he realized he had actually run a few miles.  It was not until training for this 2nd 5K that I could just run with Jaden without any mental tricks.  Every once in a while I would have him do some running drills. It was fun for him because he got to sprint for short periods of time and it made him really feel like a runner…….kids just want to sprint!

It is mid March and race day is approaching soon.  I am flying home from a business trip and decide to watch the movie Moneyball on my iPad.  While watching this movie a light bulb went off as to why I wanted my son to run and, truthfully why I think everyone should run.  Approximately ¾ of the way through the movie, things turn to the Oakland Athletics attempt at the American League record for consecutive wins.  This team that started the year playing horrible…..this team that was not expected to do much after losing some star players had won 19 games in a row.  Nineteen games in a row is unheard of and absolutely amazing.  I am no Oakland fan but I remember cheering for them as they chased this record.  I am not sure if I cheered because they were the underdog (I am a huge fan of the underdog) or simply because I was a baseball fan but I do know the world looked on.  On September 4, 2002, the Oakland Athletics were playing for the record 20 game streak.  They started strong and took an 11-0 lead over the Kansas City Royals. It was only the 3rd inning and the victory seemed inevitable.  Kansas City did not give up easily though and fought back scoring 5 runs in the 4th, 5 runs in the 8th and tied the score at 11-11 in the top of the 9th inning.  The Oakland A’s has blown an 11 run lead which takes the game to the bottom of the 9th where Scott Hatteberg was brought up as a pinch hitter.  Scott Hatteberg had a prominent role in this Moneyball season as the Oakland A’s picked him up when nobody really wanted him.  It was a dramatic moment that ended in dramatic fashion when Scott Hatteberg hit a home run to end the game and secure that 20th consecutive victory.  The movie does a great job of capturing the moment and I do not own the words to do justice to the chills I get each time I watch Hatteberg pumping his fist rounding the bases……that exuberant feeling as his teammates rush the field literally going insane.  I have had those moments in my lifetime.  I flash back to them as if they happened yesterday.  I can remember every big hit or big moment I had that warranted a high five from my Dad.  It is that exuberance…..that amazing winning feeling that running provides to everyone that gives the sport a chance.  Whether you are the fastest runner or the slowest runner, crossing the finish line is a game winning home run.  It is the end to a lot of hard work.  It is the culmination of a journey that every runner and walker gets to experience and I so badly wanted my son to know what it felt like.  I wanted him to know he was amazing and capable and a winner.  My hope was that running with his Dad might lead him to this experience.

Pre race warm up
Well, this takes us to March 24, 2012.  It is the Great Race of Agoura and a very big day on many levels.  I am coaching the Summer 2012 Westside Marathon team with Lori Jomsky and this was the day many of our amazing teammates would complete their very first 10K.  It was the day they would put on a bib and a timing chip and cross the finish line to experience what it is like to win.  This was of course also the day that Jaden and I would be running in his 2nd 5K.  I really did not know what to expect.  I did not want him to feel pressure to get a PR.  I wanted to set up the day so that he was proud of himself crossing the finish line.  As we were warming up to get ready for the start of the race, I stopped Jaden and tried to feel out where his head was.  I told him that we should go have fun and just use a sub 30 minute time as a general guideline.  My son had other plans.  He told me he wanted to go for the personal record and, at that moment, I was just proud for his desire to do so.  He was showing a belief in himself that was great to see. 

The gun goes off and the start of the race is actually downhill.  Consistent with what I always say, I told Jaden that this was a gift and that we were going to take whatever gravity would allow us. To get Jaden’s PR we needed to keep a 9:10 pace and the downhill had us way ahead of goal early into the race.  I did not want to tell Jaden how fast we were going because I didn’t want him to freak out.  He was not working hard so I felt we were okay.  The race continued and my hope was simply to make it to mile 2 before Jaden started to hurt or break down.  As it turns out, this is exactly what happened.  Mile 2 hit and I heard the first whines coming from my son.  This is where I did everything in my power to distract him.  I tried to remind him we only had one mile left.  I tried to remind him we had run a mile together many times.  I tried to point out other kids approximately his age so that he would stare at their backs and try to stay with them.  I even risked telling him our average pace...8:08…far faster than he had ever gone before.  I told him there was a slight chance at sub 8 (because we had picked up the pace) to which he said nothing.  One might assume he didn’t care but I think that time sunk in because he held on strong.  It was all working until mile 2.5 and then the whine got a little louder.  Jaden wanted to hold my hand as we ran.  I reached out to grab his hand, give it a little squeeze and then told him he could do this on his own.  At about mile 2.75, my son got very grumpy.  No matter what I said, he loudly replied ‘NO’.   Literally, this was his reply to everything I said because he was feeling some pain.  I was just running beside him trying to get him to stay tough.  The pace was all his doing and not influenced by me.  Despite the whining and the ‘NO’ chant, he kept going and we finally got close enough to the finish line that he knew where we were.  As it does for most people, this sense of being close to the end provided some strength and he drove to the finish line.  While I never stop the watch crossing the finish line…….this time I did because my son would want to know his time.  I looked down to see we had averaged under 8 minutes for the 5K.  My son closed out with a 7:40 mile, the fastest by far he had ever run.  Two steps across the finish line, my son threw up a tiny bit.  I upset someone for sharing that I felt proud of my son when I saw this but I am not here to impress anyone.  That is exactly what I felt…..proud.  I knew he was not hurt.  I knew he would be fine.  I also knew that my son had not held back.  Jaden believed in himself…..he left everything out there on the course and that was an amazing moment for my son.  I showed him the watch and could tell he was so proud of himself.  It was the Scott Hatteberg, bottom of the 9th homerun I had hoped for.  We picked up our medals……..very important to a 7 year old……and on the way to the car I stopped my son, made him look me in the eye and I told him to remember this moment.  I told him to remember he is worthy and he is amazing and that he can accomplish anything in life that he wants to.  I told him to never doubt himself for what he had just done was remarkable. For a little boy that doesn’t always focus, he did not take his eyes off of me.  It was a moment I will always remember and, although he is young, I hope my son remembers it too.

Today is Saturday, April 14, 2012.  In two days, I have to go see Jaden’s doctor.  I have no idea what he is going to say.  I am afraid of what he might tell me because I never want my son to feel different or ‘less than’.  I do not want a label to affect how my son feels about himself.  As I said above, I do not want a doctor trying to push medicine on my child.  I lost one child.  I will not lose another one to medicine that changes who Jaden is. This leads me to the song Perfect by Pink.  I have never heard Pink sing the song but I recently heard a rendition on television and the words struck home for me.

Pretty pretty please!
Don’t you ever ever feel
Like you’re less than, less than perfect
Pretty pretty please
If you ever ever feel like you're nothing… are perfect to me.

To my son, I Love You and I Love who you are.  You have the biggest heart in the world and we will figure things out.  Your Dad has not always been the best Dad on the planet and you deserve that Dad.  I have yelled more than I would like.  I have showed less patience than I would like and less patience than you deserve.  I have been getting better.  I will try even harder and I can see over the past few days that we are making progress.  Always know that you are absolutely perfect to me. Together we will work hard to make sure that you do great things with your life.


Your Dad

Saturday, March 31, 2012

Lavaman 2012: Race Day Words for Crea

Tomorrow is Lavaman 2012.  I have done this race the last three years but this time it is my amazing wife that will swim, bike and run this beautiful Kona course.  As her husband, this is what I would like her to know going into race day:

I have talked to hundreds if not thousands of people about race day and how they should be prepared mentally.  I have told these same people that Race Day ends up being  much more about the journey to the race than the race itself because it is all of the events leading up to the race that you reminisce about when you are covering the miles that lead to the finish line.  For some the journey is the exact amount of time that we met as part of Team in Training.  For others, that journey began long before we met when some significant event took place in their life.  These messages I shared and these messages I have tried to teach myself have never been more applicable than they are to you.  I am sad and proud and blessed all at the same time to have shared the events that led to this race.  I am sad we shared losses.  I am sad my Dad did not have more time to get to know you and I am sad we don’t have Isabella to fill our little condo with a lot more laughter.  I am sad that cancer knocked on your door once and even more sad it decided to visit again.  I am proud of your fight and your strength.  I am blessed by the same and I am blessed to have someone so supportive that affords me the time to fight back against the cancer that touched our lives.  Tomorrow……..I mean it so very much…………….when you toe the sand that is your start line, be proud.  Be very proud.  Everything from there is a bonus.  All you have to do is do everything you have done leading to this day…………….fight.  You are the strongest person I know……….by a landslide.  If doubt enters your head on the swim, remember that you stared cancer in the face and won.  When pain sets in on the bike or if you feel yourself not pushing as hard as you would like, remember that this day and the ability to race is a blessing.  A blessing you fought for.  A blessing you deserve and then hammer those pedals.  When you get to the run……which I know is not your favorite event…………remember all those unpleasant things you already faced and overcame and the run will seem like a cake walk.  Picture cancer trying to take that finish line from you and shove it out of the way.  Know that Isabella is out there with you.  I am sure you will feel her.  When you are tired, know she is at the finish line waiting for you and is proud of her Mom.  So are all your kids. So is everyone that knows you.  So am I.  You are an inspiration.

Friday, January 6, 2012

A Day With An Angel

This post is for our fallen friend, Lisa Kelly.  My words will be short because I want Lisa's words and the words of her best friend, Kim Tracy Prince (@kimtracyprince on Twitter), to do the talking.  I met Lisa in the virtual world where we served as support and motivation for each other. 

My wife was battling cancer. 
Lisa was battling cancer herself. 
Once you know cancer, there is an instant bond with those that know and have shared the pain.

I was proud to know Lisa and blessed to finally meet her in Palos Verdes where I was attending a Team in Training practice to share my story of loss that lead to a story of hope.  That is why I think I instantly bonded to Lisa.  She epitomized hope.  Cancer knocked on her door.  She knocked it down and through it all came out with a big smile that her friends know so well.

I was part of a small group of people that helped motivate Lisa to attempt her first half marathon with Team in Training. This is a big step for anyone but an even bigger step of faith for Lisa because when cancer attacked attacked her ankle and feet.  Running was painful for reasons you can read below but she put her trust in others that she could cross the finish line.  She had beat cancer.  She was pushing through the pain and I am certain that on January 7, 2012 she would have fulfilled her journey and crossed the Walt Disney World Half Marathon finish line...........perhaps in pain but undoubtedly smiling big.

On November 3rd of 2011 this all changed because Lisa passed away of natural causes.  Lisa's journey ended.  God had other plans. 

I learned of this news in a very emotional email and text from my friend Lori Jomsky (@lj3000 on Twitter).  The news hit me like a brick.  Lisa was doing so well.  The future was so bright for her.  After shedding my own tears for the loss of a friend, my first thought was that we needed to finish this journey for Lisa both from a fundraising and race perspective.  I really think this was everyones first thought and some words heard tonight at a Team in Training event made it clear why this was the case.  John Bingham, the Penquin, was speaking as he usually does at pre race Inspiration dinners.  He spoke of an event he attended with his son tied to giving out Purple Hearts for the Army.  At the event they shared the following warrior oath:

I will always place the mission first.
I will never accept defeat.
I will never quit.
I will never leave a fallen comrade behind.

When John read these words, he thought of Team in Training and how that is what we all do every day.  We place the mission to beat cancer first.  We will never accept defeat nor quit until cancer is a thing of the past....a chapter in the history books.  This we must do because we will never leave a fallen comrade behind.  We will not let one single person touched by cancer be forgotten and will fight hard for those currently affected.

I and a group of friends, immediately started spreading the word on Twitter that although Lisa Kelly had passed, her fundraising page lived on. When those messages hit the virtual world, Lisa was shy of having raised $3,000 but well on her way to her $4,500 fundraising goal.  Within days her fundraising total had reached $7,000 and today that total sits at $17,000.  This is an amazing testament to the person Lisa was.......the inspiration she provided while here.........and the legacy that will continue to live on long after she has passed.  As Kim Tracy Prince confirms is also a testament to hope.

Tomorrow is January 7th.  At 5:30am, the gun will go off and while Lisa Kelly will not physically be running the Disneyland Half Marathon......her journey will be completed.  Eric Orvieto (@eorvieto on Twitter) and I will be carrying her bib for 13.1 miles to make sure we finish what she started.  She exercised faith in us.  We told her we would get her to the finish line.  Tomorrow we will do just that.

If you would like to read more about Lisa in her own words, please take some time and read her blog: Call Me Dr. Lisa

If you would like to honor Lisa's journey and contribute to her fundraising page, you will find a link at her blog or you can go straight to her team in training page here: Lisa Kelly Fundraising Page

To close, I want to share something that her best friend wrote for the Team in Training Inspiration Dinner tonight.  This was written to inspire, motivate and remember.  In the words of Kim Tracy Prince:

The fact that Lisa Kelly is being honored tonight is a testament to hope:  hope that there is goodness in people, hope for the strength of the human spirit, and the hope that love endures beyond the limits of our physical bodies.

Lisa started training for this race less than a year after surgery on her left foot to remove a recurring tumor.  It was the second such operation she had, and also the second time she recovered with remarkable speed and determination, setting aside self-pity and competing in athletic events to prove to herself that she could beat cancer.  This weekend was to be her first half-marathon.  Her training was coming along nicely even while her foot was causing her great pain as the nerves healed within.  Lisa was healthy, happy 40 year-old woman who was very much looking forward to this event.

However, Lisa passed away on November 3.  Her cause of death was natural but as yet undetermined.

At the time of her death, Lisa was well on her way to her fundraising goal of $4,500.  She was able to gather support from every community she touched - as a physician, she had a large base of support from the medical community.  Her family and friends, who witnessed Lisa's incredible and inspiring journey from cancer patient to triathlete, were among her greatest supporters.  She also gathered the admiration of strangers worldwide by telling her story on her blog and using Twitter and Facebook.

News of Lisa's death spread via personal message and internet updates, and within ten days her fundraising goal had been reached and surpassed.  Because of the power of Lisa's story, friends, family, and strangers alike have donated money to this cause.

As an driven professional, Lisa had allowed physical fitness to take a back seat in her busy life.  She was a neonatologist at Children's Hospital in Los Angeles with a grueling work schedule that included a swift rise up the ranks, the lead on an ambitious national database project, and a commitment to the advancement of international medicine.  She regularly traveled to foreign countries to aid medical workers in destitute communities.  At home, Lisa made time for her family and friends, never passing up the opportunity for a fun adventure if she could fit it in between work commitments.  She was physically active, but not focused on her own health.

In 2007 Lisa was diagnosed with round cell myxoid liposarcoma in her left ankle - basically, a cancerous tumor on the nerve in the inside of her left foot.  Initial treatment options included amputation - a horrifying notion to an active woman who considered herself unlimited.  Her course of treatment eventually consisted of surgical resection followed by radiation.  The treatment left Lisa in a wheelchair, with months of physical therapy and a complete redefinition of the life in front of her.

The prospect of such a thing happening is daunting to even the most active people, and the event certainly did give Lisa pause and lots of time to feel sorry for herself.  But something happened. Lisa's grueling work with her physical therapist transformed her.  She became obsessed with her progress, changing her diet and her lifestyle to maximize the healthy changes in her body.  In that year, Lisa lost 75 pounds, regained her ability to walk, and decided to compete in a triathlon.  After surgery and radiation that would have left most people barely able to walk within a year, Lisa completed that triathlon and became a true athlete - a person for whom physical activity was not just helpful, but necessary to her very spirit.

Lisa loved the rush of running, biking, and swimming.  She craved exercise, even leaning on it to get her through emotional stress.  Training was like therapy for her mind as well as her body.  It was only fitting that she chose to compete in races for fundraising purposes as well.  She was a very giving person, who used competitions as opportunities to educate and inspire everyone around her.

Lisa did not often dwell on the cancer in personal conversations.  She preferred to keep her fear and suffering to herself.  It was through her workouts and her goals of competition that she felt she was beating the cancer, that she was living her commitment to thrive, not just talking about it.  In a way, as she wrote on her blog, although she never would have welcomed it, the cancer was a blessing, because her life was better after having gone through it.
In its infuriating way, the cancer came back to Lisa's foot in late 2010.  This time her treatment was more invasive - in addition to the tumor, part of the very nerve that gave feeling to the bottom of her left foot had to be removed.  She was left with a numb foot, and far less mobility than after the first surgery.

But this time Lisa's body was in much better shape to withstand the trauma of surgery and followup therapy, and by then she was addicted to exercise.  Within days of the operation in January of 2011, her occupational therapist approved Lisa to do chair workouts.  Within a month she was up on crutches, and soon she announced her commitment to compete in a triathlon only 8 months after surgery.  On the way to that event, Lisa signed up with Team in Training, a group that brought her something she didn't even realize she wanted:  a new family.  In them Lisa found people who were as fanatical about training as she was, and who were there for many of the same reasons.

This is a quote from her blog:'s not just about the races, the athleticism.   I want to give back to the cancer community that has supported me. I want fewer people to know this pain and fear. I want cancer in all its forms to become treatable, for fewer people to die.  Raising money for Pediatric Cancer Research as a part of the Malibu Tri, raising money for the Leukemia and Lymphoma society as a part of training for the Walt Disney World half marathon - somehow this makes sense to me.  It feels right.  I chose to give back rather than kick, scream and cry.  (Though, I've done that too).
When someone dies, we want to kick and scream and cry, and we do that, but then we need something else to do.  Many, many people directed their grief and anger to Lisa's Team in Training website and donated money so that her training would not be in vain.   Because people all over the world feel her absence, Lisa's efforts will still help cancer patients, and not just right now.  Even after years pass and Lisa Kelly's name is not on our lips every day, the work she did during her life will continue to silently, thanklessly help people.

She may not be here to run in the race this weekend, but Lisa's shining energy that made people so happy will be carried on by her training comrades.  This honor is not only for Lisa, but also for the spirit of hope that she represented.  If this astounding fundraising success can happen because of one person, think about the power of what you are all doing.  Lisa showed us that there is hope for us all.